An expensive Alzheimer's lifestyle plan offers false hope, experts say

Boston Globe

2 days ago

Kerry Briggs was taking them all because a doctor had told her that with enough supplements and lifestyle modifications, her Alzheimer's symptoms could not only be slowed, but reversed.
It is an idea that has become the focus of television specials, popular podcasts, and conferences; the sell behind mushroom supplements and self-help books.
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But the suggestion that Alzheimer's can be reversed through lifestyle adjustments has outraged doctors and scientists in the medical establishment, who have repeatedly said that there is little to no proof for such a claim and expressed concern that the idea could harm a large group of vulnerable Americans.
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John Briggs had come across the idea after learning about Dale Bredesen, who had been performing a series of small and unconventional studies through which he claimed to have designed a set of guidelines to reverse Alzheimer's symptoms.
'Very, very few people should ever get this,' Bredesen told an audience in July, referring to cognitive decline. His company has made bracelets with the phrase 'Alzheimer's Is Now Optional' on them. His pitch has gained a following. Bredesen's 2017 book, 'The End of Alzheimer's,' has sold around 300,000 copies in the United States and became a New York Times bestseller.
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A day's worth of supplements for Kerry Briggs, diagnosed with early-onset Alzheimer's.
JAMIE KELTER DAVIS/NYT
Many doctors encourage Alzheimer's patients to modify their diets and exercise regimens in hopes of slowing the disease's progress, said Dr. Bruce Miller, director of the Memory and Aging Center at the University of California San Francisco. 'The question, though, of reversal is very different.'
'It's one thing to say that you're reversing an illness because someone says they feel better and another to prove it,' Miller said. 'We don't have the proof.'
Bredesen, 72, was once also a top neurologist at the University of California San Francisco, but he has not had an active medical license for much of the past three decades and doesn't see patients anymore. He became skeptical of the medical and pharmaceutical industries' approach to treating Alzheimer's and dedicated himself to an alternative method focused on food, supplements, lifestyle tweaks, and detoxification treatments.
The central idea was that there was no 'silver bullet' -- no one pill or intervention -- that could cure Alzheimer's. Instead, Bredesen believed in firing a 'silver buckshot' (a reference to the sprayed pellets that come out of shotgun shells) by modifying 36 factors simultaneously. His strict protocol could be personalized after extensive lab testing but generally involved a low-carbohydrate diet, intermittent fasting, supplements and, at times, interventions such as hormone treatments and home mold remediation.
For the Briggses, who live in North Barrington, Ill., the adjustments did not come cheap: $1,000 a month for supplements, $450 per hour for a specialty doctor and other costs, which altogether added up to $25,000 over eight months.
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But Kerry Briggs wanted to do something to help find a treatment for the disease, and John Briggs wanted to help his wife.
More than 7 million people in the United States -- roughly 11 percent of those 65 and older -- have Alzheimer's, the world's leading cause of dementia. Despite decades of research and the development of a few medications with modest benefits, a cure for the disease has remained elusive.
The Alzheimer's Association, which helped fund Bredesen's earlier and more conventional research, sees his recent approach as insufficiently rigorous. His trials have suggested his protocol can improve cognition, but Maria Carrillo, the organization's chief science officer, said they 'fall short of what the research community' would consider convincing enough to suggest to patients, since they lack control groups and are small, with the number of participants ranging from 10 to 25.
Others have expressed similar unease. In 2020, Dr. Joanna Hellmuth, then a neurologist at the University of California San Francisco, published an article in The Lancet Neurology pointing to a number of 'red flags' within Bredesen's studies, including 'the substantial potential for a placebo effect.' Dr. Jason Karlawish, co-director of Penn Memory Center at the University of Pennsylvania, said Bredesen's research and recommendations don't adhere to the standards of medicine. The Alzheimer Society of Canada has gone so far as to say Bredesen is offering 'false hope.'
Bredesen maintains that the results of his program can be remarkable, though he acknowledges it's less successful for people with more noticeable symptoms: 'It amazes me how people fight back against something that's actually helping,' Bredesen said.
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He connected The New York Times with patients who said they had benefited from his recommendations. Sally Weinrich, 77, in South Carolina, said she used to forget her pocketbook or miss the school pickup window for her grandchildren, but now thinks more clearly. Darrin Kasteler, 55, in Utah, who had struggled to tie a necktie and to drive, said both had become easier.
To Bredesen's supporters, the testimonials are evidence of promise. But what divides Bredesen from the medical establishment isn't his emphasis on lifestyle adjustments; it is the boldness of his claims, his unconventional and strict treatment plan, and the business he is building around both.
It was one of Kerry Briggs' sisters, Jennifer Scheurer, who first noticed that something was off.
In 2021, while visiting Scheurer in Oregon, Briggs repeated the same story a few times in one day, and had trouble finding words and playing board games. Scheurer also found Briggs standing in her kitchen, seemingly lost. This was particularly odd; Briggs was an architect, and she had designed the kitchen herself.
Briggs underwent a series of tests, ending in a spinal tap, which showed evidence of Alzheimer's. She was 61.
The news was devastating, but Briggs told her husband that she wanted to enroll in a clinical trial to help others. But none of the trials admitted her. She weighed too little, and her disease was already too advanced.
Then a friend recommended 'The End of Alzheimer's.' John Briggs read that book and a follow-up, 'The First Survivors of Alzheimer's.' Excited, he reached out to Bredesen's company, Apollo Health, to see what could be done for his wife.
Bredesen had developed a paid plan called 'Recode,' a portmanteau of the phrase 'reversal of cognitive decline,' and a training program for health practitioners like medical doctors, chiropractors and naturopaths to learn to implement it. On the Apollo Health website, Bredesen's program is advertised as the 'only clinically proven program to reverse cognitive decline in early stage Alzheimer's disease.'
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In January 2024, John Briggs paid an $810 fee to join Apollo Health, which gave Kerry Briggs access to a personalized plan and matched her with Dr. Daniel LaPerriere, a doctor in Louisville, Colo.
On LaPerriere's recommendation, the Briggses began to eat a modified keto diet that was low in sugar and rich in plants, lean protein, and healthy fats. The Briggses were not allowed most fruit -- no apples, bananas, peaches or grapes ('all these things that we love,' John Briggs said), though the couple made an exception for blueberries. To see if Kerry Briggs was in a metabolic state of ketosis, where fat is used for energy instead of carbohydrates, John Briggs experimented with pricking her finger twice each day to test her blood.
In keeping with Bredesen's general guidelines, Kerry Briggs began working with a therapist to manage stress and tried the brain-training games the protocol recommended, though she struggled to play them. LaPerriere gave John Briggs the unconventional instruction to collect dust samples at home in order to determine whether 'toxic mold' was present (only trace amounts were) and ordered lab tests to see if Kerry Briggs was suffering from an inability to flush it from her organs (she wasn't).
He also prescribed Briggs hormone-replacement therapy, in the hope of improving her cognition.
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Briggs' primary-care physician raised concerns about the risks, John Briggs said, but she took the hormones anyway.
Briggs understood that the protocol would be unlikely to restore Kerry Briggs to her former self. But he was determined to see it through for at least six months.
By last September, though, John Briggs was struggling to notice many benefits. Kerry Briggs could no longer keep track of conversations with her therapist, who suggested they stop the sessions. The next month, John Briggs began touring memory-care facilities for his wife. In February, after about eight months, they quit the protocol altogether.
Bredesen said that he rarely tells people not to try his program, even if the chance of helping is small, because of the possibility of improvement. But he considered Kerry Briggs' experience 'not representative' of the results he has achieved in trials and said in retrospect that 'you could kind of tell ahead of time' that she would not fare well.
Bredesen has urged prospective patients to start his program preventively or early in the disease's progression. Helping patients already experiencing significant decline, like Briggs, is difficult, he and LaPerriere said.
'People are more incentivized to come in when they're farther along,' Bredesen said. 'And that's a real dilemma, which is why we're telling people, 'Please do not wait because we can do so much more.''
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